Characteristics of the professionals
Table 1 shows the overall distribution of staff characteristics. Staff members were mostly female (87.5%) with an overall mean age of 41 (11) years. The average number of years on the job is 14 (10). ACP is part of the routine for 76.2% of staff members, especially in middle management. Less than half of the staff members (45.7%) received training on ACP. In addition, in one third of these cases, training merely consisted of the legally required program for palliative care reference persons, which is rather broad and includes limited information on ACP.
Table 1. Characteristics of the professionals
Characteristics
|
Total N=311 (%)
|
Gender
|
Male
Female
|
39 (12.5)
272 (87.5)
|
Educational status
|
Secondary school
College
University
|
43 (13.8)
230 (74.0)
38 (12.2)
|
Profession
|
Professionals
- Nurse
- Nursing assistant
- Support roles
Middle management
- Chief nurse
- Medical director
- Specialist coordinator
Executive management
- Nursing home director
|
152 (48.9)
85
33
34
136 (43.7)
72
5
59
23 (7.4)
23
|
Discusses ACP frequently
|
Yes
No
|
237 (76.2)
74 (23.8)
|
Previous ACP training
|
Yes
No
|
142 (45.7)
169 (54.3)
|
Observed level of SDM in ACP conversations
Residents’ and staff members’ perspectives
We received 42 fully completed versions (23.9%) of both SDM-Q-DOC, SDM-Q-9 and CollaboRATE. Either both the SDM-Q and CollaboRATE questionnaires were filled out, or neither. The main reason for not completing the questionnaires was fatigue of the resident or the relatives after the conversation. Reliability estimates reported by Guttman λ-2 showed values of 0.84, 0.96 and 0.84 for SDM-Q-DOC, SDM-Q-9 and CollaboRATE respectively.
Table 2 shows the scaled SDM-Q scores at individual and at ward level. There is a significant difference in mean total scores between professionals and residents (t=-2.479, P=0.015), with professionals consistently allocating lower scores to the level of SDM.
Table 2. Scaled SDM-Q-DOC (professional) and SDM-Q-9 (resident) scores by analysis level.
Level
|
Column1
|
N
|
Mean
|
Median
|
SD
|
Minimum
|
Maximum
|
Individual level
|
SDM-Q-DOC
|
42
|
71.53
|
72.22
|
16.09
|
37.78
|
100
|
SDM-Q-9
|
42
|
81.11
|
82.22
|
19.18
|
0
|
100
|
Ward level
|
SDM-Q-DOC
|
19
|
71.58
|
68.89
|
13.94
|
50
|
91.11
|
SDM-Q-9
|
19
|
81.50
|
80.74
|
12.69
|
62.22
|
100
|
† Scores range 0-100
Kappa scores for single items range from -0.04 to 0.59. Both conversation partners moderately agree that the need to make a decision was clearly expressed (κ=0.59). They differ in opinion on the extent to which treatment options were discussed (κ=-0.04). We explored this statement further by looking at the conversation summary each party provided. Almost all professionals (41/42) mentioned ACP as the subject of the conversation, and included a number of topics discussed. In contrast, only 10/42 residents or relatives (23.8%) referred to ACP. Another 11/42 persons (26.2%) wrote down a single discussed topic, while 21/42 (50%) could not provide a topic.
The top score approach shows that 45% of residents or relatives gave a maximum score on all three items of CollaboRATE. Pearson correlation indicates a positive relation between SDM-Q-9 and CollaboRATE (r=0.436, P=0.004).
External raters’ perspective
The OPTION data consisted of 170 audio files from all 65 wards (100% RR). The intra-class correlation coefficients for the total score for each group of raters were 0.89 and 0.78 respectively. At the item level, there was moderately high variability within the two sets of observers: Kappa scores ranged from 0.54-0.87 and 0.49-0.85 respectively.
Individual conversations received an average score of 27.30/100 (σ=12.73), ranging from 5.21 up to 65.63. At ward level, this resulted in average scores of 26.97 out of 100 (σ=10.45).
Single item scores were skewed, with the majority lying between 0 (behavior is absent) and 2 (minimum skill level) (see Table 3). The behavior least demonstrated by professionals in the conversations was “assessing the resident’s preferred approach to receiving information to assist decision-making” (x̄=0.13). “Drawing attention to an identified problem that requires decision-making” received the highest average score (x̄=2.06).
Table 3. OPTION-12 item scores.
No
|
Item
|
Mean
|
Median
|
SD
|
1
|
The clinician draws attention to an identified problem as one that requires a decision making process
|
2.06
|
2.00
|
0.67
|
2
|
The clinician states that there is more than one way to deal with the identified problem
|
1.10
|
1.00
|
0.57
|
3
|
The clinician assesses the preferred approach to receiving information to assist decision making
|
0.13
|
0.00
|
0.28
|
4
|
The clinician lists 'options', which can include the choice of 'no action'
|
1.60
|
1.5
|
0.85
|
5
|
The clinician explains the pros and cons of options
|
0.99
|
1.00
|
0.89
|
6
|
The clinician explores the expectations (or ideas) about how the problem(s) are to be managed
|
1.90
|
2.00
|
0.90
|
7
|
The clinician explores the concerns (fears) about how problem(s) are to be managed
|
0.74
|
0.50
|
0.82
|
8
|
The clinician checks that the information has been understood
|
0.44
|
0.00
|
0.63
|
9
|
The clinician offers explicit opportunities to ask questions during the decision making process
|
0.86
|
0.75
|
0.80
|
10
|
The clinician elicits the preferred level of involvement in decision-making
|
1.08
|
1.00
|
1.05
|
11
|
The clinician indicates the need for a decision making (or deferring) stage
|
1.35
|
1.00
|
0.97
|
12
|
The clinician indicates the need to review the decision (or deferment)
|
1.32
|
1.50
|
1.05
|
† Scores range 0-4, with a score ≥2 meaning the minimum skill level has been achieved
Clustering scores to ward level revealed that only two wards reached an average score above the minimum skill level of 50/100, scoring 53/100 and 64/100 respectively. Residents were present during 89/170 (52.4%) of the conversations. Conversations during which residents were present, correlated negatively with OPTION scores (r=-0.246, P<0.001). This means that less SDM was observed when the person with dementia attended the conversation. Discussions lasted an average of 25.70 (±19.71) minutes. Longer conversations correlated significantly with higher OPTION scores (r=0.404, P<0.001).
Importance, frequency and feelings of competence in using SDM skills
280 professionals (90.0% RR) filled in the IFC-SDM. 45% of non-respondents stated insufficient experience in discussing ACP to assess the different SDM skills. Guttman λ-2 values for the categories importance, frequency and competence were 0.95, 0.98 and 0.96.
Pearson correlation indicated a positive relationship between how important professionals considered SDM to be and how competent they felt in applying SDM (r=0.315, p<0.001). Perceived importance of SDM was also related to how frequently they participated in SDM (r=0.278, p<0.001). Finally, perceived competence was positively associated with frequency of use (r=0.510, p<0.001).
In Table 4 the IFC-SDM scores are grouped by analysis level. Nursing home staff considered SDM to be important (x̄=4.48/5, minimum item score 3/5). This result contrasts significantly with the frequency and competence with which these skills were put into practice (P<0.001). SDM was considered significantly more important during crises than during daily conversations (one-way ANOVA F(2,837)=3.90, P=0.021; post-hoc Tukey mean difference 0.11±0.04, P=0.016). The frequency of using SDM skills and the feelings of competence did not differ between the types of conversation.
Table 4. IFC-SDM scores for each category by analysis level.
Level
|
Column1
|
|
Mean
|
Median
|
SD
|
Individual level
|
Importance
|
|
4.48
|
4.54
|
0.42
|
Frequency
|
|
3.50
|
3.67
|
0.86
|
|
Competence
|
|
3.76
|
3.89
|
0.50
|
Ward level
|
Importance
|
|
4.48
|
4.48
|
0.26
|
Frequency
|
|
3.48
|
3.54
|
0.51
|
|
Competence
|
|
3.76
|
3.78
|
0.27
|
† Scores range 1-5
The highest scoring items in all three categories were “exploring residents’ preferences” and “offering the option to re-discuss decisions at a later point in time”. “Providing information on different care options”, “discussing the (dis)advantages of different care options”, and “guiding residents towards making a decision” were considered to be the least important SDM skills. These skills were also used less frequently and were associated with lower feelings of competence.